Disability and other things you're not supposed to enjoy

“”Don’t walk behind me; I may not lead. Don’t walk in front of me; I may not follow. Just walk beside me and be my friend.”

I don’t like the seniors’ class motto. Walking next to me is not a friendly act. People do it so we can have a conversation, certainly. But if we’re out in public, I’m trying not to get lost. I don’t have the mental bandwidth to navigate and talk to someone at the same time.

Even worse, people who want to walk beside me often insist on walking on my left-hand side. I don’t notice a lot of things on my left. What they experience as “not looking me in the eye” or “not being friendly,” I experience as “someone’s sneaking up on me.”

When I see the senior class motto on its felt banner at school assemblies, I know I’m being silly. My mother’s voice chides me in my head: “You have NLD and are being literal. It’s not talking about actually leading or following, or walking next to people. It’s a metaphor.” I know it’s a metaphor. That’s why it bothers me.Continue Reading »

My teacher says that writing too much is a good problem to have. “Most people,” she tells me, “have to flesh out their ideas. That’s much harder than having to cut things out.” She doesn’t understand why I can’t just do it, and I, at fourteen, am no help. It will be years before I go to conferences and see other people with my diagnosis freeze when asked to summarize things. It will be even longer before I realize what my having a “good problem” really means.Continue Reading »

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Neill Blomkamp’s story of space aliens abused by Earthlings is about racism without actually involving race—and therein lies the problem. The parallels reflecting atrocities committed against black South Africans by white ones are clear: the aliens, called hateful names (“prawns”) by human bureaucrats are being forced from their shantytown in a multiple-of-three district in Cape Town to a smaller, more out-of-the-way compound. Signs read, “Humans only;” the aliens are constructed as violent for no real reason (they like to blow things up “for fun,” says the human protagonist), while the humans destroy them with impunity.

“You look like a lost puppy!” said a friend as I was looking for my seat in the college cafeteria. Once someone offered me a glass of water as soon as I walked in. Another time, a man pulled me off the street and forced me to sit down at an outdoor table and didn’t even ask me about the water—he just gave me a glass. And yes, there was that really bizarre time when I was in high school, and a teacher grabbed me by the shoulders, shook me and said to me V-E-R-Y S-L-O-W-L-Y: “The Sophomores. Are meeting. In the gym.” But what usually happens is, people—other white women, not much older than me, if they are older than me at all—call me “sweetie.”

“My eldest sister, Rosemary, was twenty-three in 1941. Luminously pretty and round-faced, with a widow’s peak, dark brows, and a great smile that dimpled her cheeks, Rosemary was the one sibling with whom all the others were unfailingly gentle. Her affliction, diagnosed as mental retardation, left her struggling to comprehend things as quickly or as clearly as other people. She was a sweet and loving human being.

Rosemary enriched the humanity of all of us. Our sister Eunice seemed always to be near her, helping her through simple childhood games such as dodgeball, inviting her along and giving her assignments in sailing races. As she grew into adolescence, Rosemary knew she could count on Jack or Joe to escort her to dances at the Yacht Club at the Cape, or to the Stork Club in New York. I looked out for her too, when I could, although I was fourteen years younger–she was my godmother, after all. Dad wrote affectionate letters to her from abroad, and Mother actually altered her own handwriting from the swirling ‘fine Spencerian hand’ on which she’d prided herself, to a simpler style that imitated typographic print, so that Rosemary would have less trouble following it.

But in the fall of that year, our father, concerned that Rosemary’s condition would pose insurmountable dangers to her as an adult woman in the world, listened to doctors who assured him that a new form of neurosurgery would greatly benefit her and improve her quality of life. The doctors were wrong, the surgery further injured Rosie, and my parents were devastated. I, of course, knew and understood nothing of what had happened. Rosemary spent her remaining sixty-three years mostly in comfortable supervision at her home in a Catholic community in Wisconsin. Over the years, through her regular visits to Eunice’s home or her summer days on Cape Cod or wintertime in Florida or Thanksgiving at Jean’s, Rosemary remained a loving and inspirational presence in our family, not just for her siblings, but for the next generations as well.” (pp. 25-6)